Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 Wow. That is rare, but, Mumper must be praised for that. She has a lot of influence at ARI / DAN. They should establish some ethical standards or a DAN patients bill of rights. Maybe not these recommendations, but, a set of standards that gives these kids the maximum treatment for what the parents can afford. To answer the other question in my opinion is very hefty profit margins, plus the money they directly earn from the labs like DD and some supplements. my DAN Dr. never mentioned kirkman, yet sold his supplements for 200% more on average. The justification for this is better quality labs, supplements and we cannot have the insurance companies dictate how we treat our patients. I often wonder how many DAN Doctors have approached state legislators, medical associations and reached out to service providers. Is mainline medicine going to take them seriously with a parent account of got better, got worse data? It is really sad because we know they can validate many their treatments, but, refuse to publish for, as I see it, profit motive! The leadership of ARI was invited to testify at the recent NY state autism hearings. Not one showed up or even mailed a letter outlining what they stand for. Representatives from A-champ, FAIR, NAA, ASA, AS, NYU, and others all had a presence, but, the medical group that treats our kids couldn't send a letter or any written testimony? They have a conference in Washington, yet make no effort to present collaboratively to our government officials. We need to demand greater ethics, character and vision from ARI and grow a spine for the sake of our kids and especially the kids and families who cannot afford an extra mortgage payment every month. We have made these doctors very wealthy and they deserve to make a decent salary. What have they given back towards research? I would like to know. There are a few brave people treating these children biomedically and working with mainline medicine. They are flying under the radar. They will not be attending any DAN conference this year. Why? They are prescribing the same or similar labs, except one small difference..... It is 100% covered by insurance. I will not paint all DAN Doctors with a broad brush. Many are good people and charge a fair rate for excellent services and treatment. Many are not even doctors, what kind of standard is that? Many parents and advocates are tired of doing the heavy lifting for DAN and seeing no future for insurance coverage for ALL these children. I know you all love your DAN Doctors, but, it is selfish and unethical in what they are doing. They are absolutely discriminating against parents at the lower end of the economic ladder. > > > > > > > > Hi . Have you tried making a claim for the Doctors Data > Labs > > > under > > > > your insurance? I know every policy is different, but I submit > all > > > my > > > > labs to blue cross and they have covered all of them 100%. They > have > > > > mostly been great plains and DD labs. They even covered the > urine > > > toxic > > > > metals which surprised me. > > > > > > > > > > > > > > > > I never have the lab claim it, because Great Plains charges the > > > > insurance co more and then we foot the full bill if they deny. > Less > > > risk > > > > to pay the cash price upfront and then submit to the insurance. > I > > > had up > > > > to a year to submit from the date of the lab test. > > > > > > > > > > > > > > > > Also our compounding pharmacy makes the claims to insurance for > our > > > > compound meds too. In the past, TD glutathione, TD DMPS, B12 > shots > > > were > > > > all covered. Our Rx deductible went up for compounds this year > > > though, > > > > so in some cases, the cost was less then the $50 deductible. > > > > > > > > Becky > > > > > > > > (some of the labs are covered under our insurance, like the > CBC and > > > > Chem panel) but the blood and urine thru Doctors Data is > NOT.... > > > > > > > > so all that comes to an avg of $550 a month > > > > > > > > NOW we have a Blue Cross Highmark PPO and I JUST NOW found out > that > > > > great plains bills them so I may be able to save on labs --for > a > > > little > > > > while... as we are moving in 4 months and the PPO is cobra > coverage > > > and > > > > the state is paying for it and we will be dropped when we move > to > > > LA. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 Holly, It would be great if DAN practitioners published more, but it is not as if there are funders ready to fund studies, and journals ready to publish those studies. Consider that DAN doctors are practitioners, and are not academic researchers. They do not have laboratories, or laboratory assistants, or statisticians at their disposal. The IRB's often stand in the way of data they do want to use and publish. I had a conversation with a DAN practitioner this very night about this. This is one of the rare DAN clinicians who has taken the time and expense (his own) to collect data regarding several novel interventions and findings, and actually published several studies. There have been many obstacles to doing this, not the least of which is the burden of collecting, coordinating and analyzing data while servicing a full complement of patients in a medical practice. This particular physician sought funding for one very important study from the " largest " autism organization and was turned down cold. When he put together a way to do the study on his own the academic institution that performed the lab work producing part of the data backed down when they saw the commercial import of the data - they wanted to keep the data to themselves because they could obtain a patent. So the DAN doctor, whose mission was treatment, was left out in the cold and a critical part of the data, very important stuff that might help many kids, never saw the light of day. This DAN doctor may be an exception - he has published a number of studies on his own, but the primary fault lies not with the DAN physicians but with a regime of research and research funding that works against the treatment objectives of the DAN protocol. Most public dollars and certainly almost all private dollars are never going to be devoted to DAN physicians. ARI laudably does raise some money and uses it wisely - generating some research. Yes, it would be better of the data collected by our DAN doctors were published, thereby validating their work, but look to the real culprits, the government research regime and as collaborators- the private organizations that have collected the community's money and hoarded it for research that is not dedicated to helping our kids today. Those are the true culprits and our children suffer more than necessary because of the obstacles they - those that control the research funds - create. Bob K. On Apr 2, 2007, at 11:48 PM, rjkrakow wrote: >> >> Hi . Have you tried making a claim for the Doctors Data Labs > under >> your insurance? I know every policy is different, but I submit all > my >> labs to blue cross and they have covered all of them 100%. They have >> mostly been great plains and DD labs. They even covered the urine > toxic >> metals which surprised me. >> >> >> >> I never have the lab claim it, because Great Plains charges the >> insurance co more and then we foot the full bill if they deny. Less > risk >> to pay the cash price upfront and then submit to the insurance. I > had up >> to a year to submit from the date of the lab test. >> >> >> >> Also our compounding pharmacy makes the claims to insurance for our >> compound meds too. In the past, TD glutathione, TD DMPS, B12 shots > were >> all covered. Our Rx deductible went up for compounds this year > though, >> so in some cases, the cost was less then the $50 deductible. >> >> Becky >> >> (some of the labs are covered under our insurance, like the CBC and >> Chem panel) but the blood and urine thru Doctors Data is NOT.... >> >> so all that comes to an avg of $550 a month >> >> NOW we have a Blue Cross Highmark PPO and I JUST NOW found out that >> great plains bills them so I may be able to save on labs --for a > little >> while... as we are moving in 4 months and the PPO is cobra coverage > and >> the state is paying for it and we will be dropped when we move to > LA. >> > --- End forwarded message --- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 And here is a recent ARI funded study by several DAN! doctors and associates (Boris, Goldblatt, Edelson, Elice, ) evaluating a novel treatment for neuroinflammation. Remarkable that they had the wherewithal to publish this. You can be sure that our largest autism community organization did not contribute to the publication of this study. Sure, studies like this are few and far between, but it is extraordinarily difficult for an unfunded practioner to produce this kind of study – especially when the bulk of the funding goes to the AGP and CNV studies. RJK > >> > >> Hi . Have you tried making a claim for the Doctors Data Labs > > under > >> your insurance? I know every policy is different, but I submit all > > my > >> labs to blue cross and they have covered all of them 100%. They have > >> mostly been great plains and DD labs. They even covered the urine > > toxic > >> metals which surprised me. > >> > >> > >> > >> I never have the lab claim it, because Great Plains charges the > >> insurance co more and then we foot the full bill if they deny. Less > > risk > >> to pay the cash price upfront and then submit to the insurance. I > > had up > >> to a year to submit from the date of the lab test. > >> > >> > >> > >> Also our compounding pharmacy makes the claims to insurance for our > >> compound meds too. In the past, TD glutathione, TD DMPS, B12 shots > > were > >> all covered. Our Rx deductible went up for compounds this year > > though, > >> so in some cases, the cost was less then the $50 deductible. > >> > >> Becky > >> > >> (some of the labs are covered under our insurance, like the CBC and > >> Chem panel) but the blood and urine thru Doctors Data is NOT.... > >> > >> so all that comes to an avg of $550 a month > >> > >> NOW we have a Blue Cross Highmark PPO and I JUST NOW found out that > >> great plains bills them so I may be able to save on labs --for a > > little > >> while... as we are moving in 4 months and the PPO is cobra coverage > > and > >> the state is paying for it and we will be dropped when we move to > > LA. > >> > > > > --- End forwarded message --- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 Sorry, here is the url for the study published in the Journal of Neuroinflammation http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=1781426 & blobtype=pdf title: Case study Effect of pioglitazone treatment on behavioral symptoms in autistic children RJK > > >> > > >> Hi . Have you tried making a claim for the Doctors Data Labs > > > under > > >> your insurance? I know every policy is different, but I submit all > > > my > > >> labs to blue cross and they have covered all of them 100%. They have > > >> mostly been great plains and DD labs. They even covered the urine > > > toxic > > >> metals which surprised me. > > >> > > >> > > >> > > >> I never have the lab claim it, because Great Plains charges the > > >> insurance co more and then we foot the full bill if they deny. Less > > > risk > > >> to pay the cash price upfront and then submit to the insurance. I > > > had up > > >> to a year to submit from the date of the lab test. > > >> > > >> > > >> > > >> Also our compounding pharmacy makes the claims to insurance for our > > >> compound meds too. In the past, TD glutathione, TD DMPS, B12 shots > > > were > > >> all covered. Our Rx deductible went up for compounds this year > > > though, > > >> so in some cases, the cost was less then the $50 deductible. > > >> > > >> Becky > > >> > > >> (some of the labs are covered under our insurance, like the CBC and > > >> Chem panel) but the blood and urine thru Doctors Data is NOT.... > > >> > > >> so all that comes to an avg of $550 a month > > >> > > >> NOW we have a Blue Cross Highmark PPO and I JUST NOW found out that > > >> great plains bills them so I may be able to save on labs --for a > > > little > > >> while... as we are moving in 4 months and the PPO is cobra coverage > > > and > > >> the state is paying for it and we will be dropped when we move to > > > LA. > > >> > > > > > > > --- End forwarded message --- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 , I know a Dan who is overseeing 4 research studies right now. Hopefully, those studies will help with getting insurance coverage for biomedical autism treatments. > > Holly, > > It would be great if DAN practitioners published more, but it is not as > if there are funders ready to fund studies, and journals ready to > publish those studies. Consider that DAN doctors are practitioners, and > are not academic researchers. They do not have laboratories, or > laboratory assistants, or statisticians at their disposal. The IRB's > often stand in the way of data they do want to use and publish. > > I had a conversation with a DAN practitioner this very night about > this. This is one of the rare DAN clinicians who has taken the time and > expense (his own) to collect data regarding several novel interventions > and findings, and actually published several studies. There have been > many obstacles to doing this, not the least of which is the burden of > collecting, coordinating and analyzing data while servicing a full > complement of patients in a medical practice. This particular physician > sought funding for one very important study from the " largest " autism > organization and was turned down cold. When he put together a way to do > the study on his own the academic institution that performed the lab > work producing part of the data backed down when they saw the > commercial import of the data - they wanted to keep the data to > themselves because they could obtain a patent. So the DAN doctor, whose > mission was treatment, was left out in the cold and a critical part of > the data, very important stuff that might help many kids, never saw the > light of day. > > This DAN doctor may be an exception - he has published a number of > studies on his own, but the primary fault lies not with the DAN > physicians but with a regime of research and research funding that > works against the treatment objectives of the DAN protocol. Most public > dollars and certainly almost all private dollars are never going to be > devoted to DAN physicians. ARI laudably does raise some money and uses > it wisely - generating some research. Yes, it would be better of the > data collected by our DAN doctors were published, thereby validating > their work, but look to the real culprits, the government research > regime and as collaborators- the private organizations that have > collected the community's money and hoarded it for research that is not > dedicated to helping our kids today. > > Those are the true culprits and our children suffer more than necessary > because of the obstacles they - those that control the research funds - > create. > > Bob K. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 I find it odd or rare that a DD lab is covered by insurance. Labcorp has a urine toxic metals kit 100% covered by insurance. I don’t know about Labcorp, all I know is that my Anthem BCBS HMO covers the DD labs. Maybe it is rare, I don’t know. I think PPO plans are stricter on what they cover, but I have not studied the ins and outs of the different types of plans. Your friendly, financially sensitive DAN Dr. doesn't get a cut though. I don’t believe all DAN’s take a cut. I’m pretty certain mine doesn’t. " Mr DAN Dr. can you prescribe the labcorp instead of the DD because I don't have enough money to buy the same lab? " It is always good to be upfront with your doctor, DAN or otherwise, about your financial situation. They can’t determine it if you never tell them. I have several friends in this situation, told their DAN up front, and they are more than willing to help prioritize, as well as find less expensive ways to pay for things. Not all the DAN Doctors are ethical or sensitive to the financial plight of these families trying to treat their children. True, but many are. I think this goes along with what Lenny said in the Yasko thread. All you have to do to be a DAN is go to one conference. There are good and bad DANs. Parents need to be saavy about who they choose to treat their child and not go in all trusting just because someone says they are a ‘DAN’. Personally, I try to pick someone who has an ASD child themselves and knows how this can impact a family financially and otherwise. If you don’t like how someone does business, vote with your feet. I guess the financially strapped single mom or dad with 2 ASD children and insurance is not entitled to biomedical interventions under the current DAN vision. This money grubbing nonsense has gone on long enough. How dare ARI publicly call the pharma industry greedy and continue to do what they do without attempting to mainstream their practices. It is time for ARI to start working with mainline medicine so ALL these children have an opportunity to heal. I fully understand that they have uncovered and solved some of our children's problems. ARI has no plans mainstream their treatment, address insurance, validate all their treatments through peer reviewed science, or work with our local pediatricians. I think these are legitimate concerns. Maybe you should direct these questions to Maureen O’Donnell at DAN? In my experience though, what DAN’s charge is much less than what a specialist charges. 3 years ago, we had a high deductible policy ($5k per person) for me and the kids when I stopped working. We paid everything out of pocket until we reached the deductible which never happened. I paid $200 for the 10 minute, useless neurologist visit. A ½ hour visit with my DAN is just under $200, and I get way more out of it. I am also treating two kids, one ASD and one screwed up biologically (gut, metals issues) but not ASD. I understand your concerns. I would encourage parents to look at this from all perspectives though, before making assumptions. Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 Call your insurance and ask for a claims form. Submit your receipt from the Drs’ visit/labs what have you and fill out the form. The forms will often ask for codes, these should be on the lab and drs visit receipts. If not, then ask the dr to provide the appropriate code to the lab or their internal records and resend a receipt with the codes. Plans vary, but mine gives me a year to ask for reimbursement. I would be surprise if we ever see direct insurance billing coming from a DAN office. They would have to negotiate with way too many insurance companies and then we would really see DAN prices go up. The only way I would see this happening is if DAN became standard of care for ASD kids, and we had several in every state that mostly only saw kids from their state so less insurance companies to deal with. The website idea is a good one. Don’t think there’s anything out there. Becky I KNOW! My lab test paperwork given to me by the DAN already had the insurance info section crossed out becuase I guess they didn't want me to even try going thruough the insurance, at least not until after I had already paid for it! And as far as even asking any questions regarding how I might go about getting reimbursed through the claim process, their answer is " we don't deal with insurance " . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 I love this thread. The DAN Doc that we took our son to for treatment began his sales pitch with the warning that insurance wouldn't cover his services so we shouldn't bother sending in the forms. He did say that they might cover some of the lab work though, and handed us some forms to submit. He was less than encouraging. Through my work I have excellent coverage and it has covered a lot of the things we've done for our son. I even have a prescription plan that is surprisingly good. Yet, this doctor began by telling me I couldn't use it. My BS detector must have been in hibernate mode that morning. But, after spending thousands of dollars on testing and supplements, many we later found at substantially lower cost from Kirkman or even Whole Foods, we woke up. This particular practice, by all appearances, was overtly profit driven and we elected to move on. Obviously, not all DAN's are created equal. Despite our distasteful experience, I know the DAN protocol works for some, probably most, of the autistic children I have come into contact with, including our son. I have no doubt that many have even "recovered". My wife and I listened to Obradovic describe her journey and the remarkable recovery of her daughter at the Chicago NAA meeting in January and were convinced. I have also read too many stories, and seen too many videos of too many recovered children to dismiss the blatant evidence. What bothers me is that, for whatever reasons, the ARI and DAN's have chosen to hide their successes from mainstream medicine rather than challenge the mainstream philosophy that advocates practicing chemistry rather than practicing medicine. I agree with Bob Krakow that it is difficult to get funding for scientific studies, but it's not impossible. Look, somebody gave that guy money to tell us that too much TV causes autism, and he got published in the Wall Street Journal. Imagine what could be done with a serious approach to autism research. If as you say, there are papers currently published supporting the DAN position, they need to be widely disseminated throughout the scientific and autism community. We need to shove this type of information in the faces of those who dismiss the evidence of harm, and the evidence of recovery. Without the published scientific papers the DAN protocol will continue to be branded as "junk science" by the high priests of medicine. I sure you all realize that the Jill Neimark article in April's issue of Discover Magazine opened a very big door for us. Let's barge into the room. Harry H. See what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 Becky, Maureen McDonnell is just a conference organizer and occasional speaker. She has no say over what happens in DAN/ARI. That’s Liz and ’s job now. Does anyone have the newest ARRI newsletter? It came in the mail the day I was doing my CBS interview at the house. I gave it to the reporter without getting to read it but saw that it did have an article about all the new ARI priorities and plans. Can anyone nutshell what those are for those of us who didn’t get to read it??? please??? From: EOHarm [mailto:EOHarm ] On Behalf Of Becky Grant-Widen Sent: Tuesday, April 03, 2007 7:27 AM EOHarm Subject: RE: Re: Does anyone know.... I think these are legitimate concerns. Maybe you should direct these questions to Maureen O’Donnell at DAN? In my experience though, what DAN’s charge is much less than what a specialist charges. 3 years ago, we had a high deductible policy ($5k per person) for me and the kids when I stopped working. We paid everything out of pocket until we reached the deductible which never happened. I paid $200 for the 10 minute, useless neurologist visit. A ½ hour visit with my DAN is just under $200, and I get way more out of it. I am also treating two kids, one ASD and one screwed up biologically (gut, metals issues) but not ASD. I understand your concerns. I would encourage parents to look at this from all perspectives though, before making assumptions. Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 Bob, yes that is a rare DAN doc. He is an exception. Yes, the system is against us but this is not new. As parents, we have to fight it but are you telling me, that while we silly, lowly, overworked, unpaid, overtired, broke parents have to fight the system but the DAN docs who make $400 an hour DO NOT HAVE TO AND SHOULND’T EVEN BE EXPECTED TO? Really? That sucks. And parents get to have bake sale, car wash, sell-your-ass-on-ebay fundraisers to fund this research but the docs shouldn’t have to fork out a dime? Really? The systemic problems that you talked about is where I think the ARI could have, and should, come in and figure out a way around these problems. Not every university is crooked or unwilling. Create it from scratch if you have to. But doing nothing because it’s hard is not a good excuse. Our kids deserve it. And it’s not like the research will only benefit us. It will benefit them too. I know a lot of docs who work in mainstream medicine that hide their “DAN” approach. If we can get this stuff published, get health insurance coverage, then we all win. Really. From: EOHarm [mailto:EOHarm ] On Behalf Of Krakow Sent: Tuesday, April 03, 2007 12:09 AM eoharm Subject: Re: Re: Does anyone know.... Holly, It would be great if DAN practitioners published more, but it is not as if there are funders ready to fund studies, and journals ready to publish those studies. Consider that DAN doctors are practitioners, and are not academic researchers. They do not have laboratories, or laboratory assistants, or statisticians at their disposal. The IRB's often stand in the way of data they do want to use and publish. I had a conversation with a DAN practitioner this very night about this. This is one of the rare DAN clinicians who has taken the time and expense (his own) to collect data regarding several novel interventions and findings, and actually published several studies. There have been many obstacles to doing this, not the least of which is the burden of collecting, coordinating and analyzing data while servicing a full complement of patients in a medical practice. This particular physician sought funding for one very important study from the " largest " autism organization and was turned down cold. When he put together a way to do the study on his own the academic institution that performed the lab work producing part of the data backed down when they saw the commercial import of the data - they wanted to keep the data to themselves because they could obtain a patent. So the DAN doctor, whose mission was treatment, was left out in the cold and a critical part of the data, very important stuff that might help many kids, never saw the light of day. This DAN doctor may be an exception - he has published a number of studies on his own, but the primary fault lies not with the DAN physicians but with a regime of research and research funding that works against the treatment objectives of the DAN protocol. Most public dollars and certainly almost all private dollars are never going to be devoted to DAN physicians. ARI laudably does raise some money and uses it wisely - generating some research. Yes, it would be better of the data collected by our DAN doctors were published, thereby validating their work, but look to the real culprits, the government research regime and as collaborators- the private organizations that have collected the community's money and hoarded it for research that is not dedicated to helping our kids today. Those are the true culprits and our children suffer more than necessary because of the obstacles they - those that control the research funds - create. Bob K. On Apr 2, 2007, at 11:48 PM, rjkrakow wrote: >> >> Hi . Have you tried making a claim for the Doctors Data Labs > under >> your insurance? I know every policy is different, but I submit all > my >> labs to blue cross and they have covered all of them 100%. They have >> mostly been great plains and DD labs. They even covered the urine > toxic >> metals which surprised me. >> >> >> >> I never have the lab claim it, because Great Plains charges the >> insurance co more and then we foot the full bill if they deny. Less > risk >> to pay the cash price upfront and then submit to the insurance. I > had up >> to a year to submit from the date of the lab test. >> >> >> >> Also our compounding pharmacy makes the claims to insurance for our >> compound meds too. In the past, TD glutathione, TD DMPS, B12 shots > were >> all covered. Our Rx deductible went up for compounds this year > though, >> so in some cases, the cost was less then the $50 deductible. >> >> Becky >> >> (some of the labs are covered under our insurance, like the CBC and >> Chem panel) but the blood and urine thru Doctors Data is NOT.... >> >> so all that comes to an avg of $550 a month >> >> NOW we have a Blue Cross Highmark PPO and I JUST NOW found out that >> great plains bills them so I may be able to save on labs --for a > little >> while... as we are moving in 4 months and the PPO is cobra coverage > and >> the state is paying for it and we will be dropped when we move to > LA. >> > --- End forwarded message --- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 I don’t know whether the DAN docs get a kick back from labs or not. I guess some of them do when they prescribe them like they do when they resell supplements – they buy them at a bulk discount and sell them to you at full or marked up prices. It’s one of my tip-offs for “how not to choose a doctor”. I don’t see the DAN movement as deliberately excluding the poor kids from treatment, but that is the end result of charging $400 an hour. I don’t see DAN docs as merely money grubbers either. Some are, and some of the “most respected” are the worst. One showed up at the Long Island conference last year showing off pictures of his band new 8000 sq foot custom built house to people, while telling parents to figure out how to take out a second mortgage on their own home to help their kids. I wanted to throw up. I wanted to kick him down a flight of stairs. I recognize that he stands out as a pig to me because he is the exception rather than the rule but the fact that he’s allowed to participate and speak at the DAN makes me sick. PUKE. I was told recently that the DAN doctor list will be changing dramatically “soon” and there would be new requirements to be on it. that’s great. But I’d like to see some training in how to help the family financially too. From: EOHarm [mailto:EOHarm ] On Behalf Of ahs10402 Sent: Monday, April 02, 2007 11:20 PM EOHarm Subject: FW: Re: Does anyone know.... Wow. That is rare, but, Mumper must be praised for that. She has a lot of influence at ARI / DAN. They should establish some ethical standards or a DAN patients bill of rights. Maybe not these recommendations, but, a set of standards that gives these kids the maximum treatment for what the parents can afford. To answer the other question in my opinion is very hefty profit margins, plus the money they directly earn from the labs like DD and some supplements. my DAN Dr. never mentioned kirkman, yet sold his supplements for 200% more on average. The justification for this is better quality labs, supplements and we cannot have the insurance companies dictate how we treat our patients. I often wonder how many DAN Doctors have approached state legislators, medical associations and reached out to service providers. Is mainline medicine going to take them seriously with a parent account of got better, got worse data? It is really sad because we know they can validate many their treatments, but, refuse to publish for, as I see it, profit motive! The leadership of ARI was invited to testify at the recent NY state autism hearings. Not one showed up or even mailed a letter outlining what they stand for. Representatives from A-champ, FAIR, NAA, ASA, AS, NYU, and others all had a presence, but, the medical group that treats our kids couldn't send a letter or any written testimony? They have a conference in Washington, yet make no effort to present collaboratively to our government officials. We need to demand greater ethics, character and vision from ARI and grow a spine for the sake of our kids and especially the kids and families who cannot afford an extra mortgage payment every month. We have made these doctors very wealthy and they deserve to make a decent salary. What have they given back towards research? I would like to know. There are a few brave people treating these children biomedically and working with mainline medicine. They are flying under the radar. They will not be attending any DAN conference this year. Why? They are prescribing the same or similar labs, except one small difference..... It is 100% covered by insurance. I will not paint all DAN Doctors with a broad brush. Many are good people and charge a fair rate for excellent services and treatment. Many are not even doctors, what kind of standard is that? Many parents and advocates are tired of doing the heavy lifting for DAN and seeing no future for insurance coverage for ALL these children. I know you all love your DAN Doctors, but, it is selfish and unethical in what they are doing. They are absolutely discriminating against parents at the lower end of the economic ladder. > > > > > > > > Hi . Have you tried making a claim for the Doctors Data > Labs > > > under > > > > your insurance? I know every policy is different, but I submit > all > > > my > > > > labs to blue cross and they have covered all of them 100%. They > have > > > > mostly been great plains and DD labs. They even covered the > urine > > > toxic > > > > metals which surprised me. > > > > > > > > > > > > > > > > I never have the lab claim it, because Great Plains charges the > > > > insurance co more and then we foot the full bill if they deny. > Less > > > risk > > > > to pay the cash price upfront and then submit to the insurance. > I > > > had up > > > > to a year to submit from the date of the lab test. > > > > > > > > > > > > > > > > Also our compounding pharmacy makes the claims to insurance for > our > > > > compound meds too. In the past, TD glutathione, TD DMPS, B12 > shots > > > were > > > > all covered. Our Rx deductible went up for compounds this year > > > though, > > > > so in some cases, the cost was less then the $50 deductible. > > > > > > > > Becky > > > > > > > > (some of the labs are covered under our insurance, like the > CBC and > > > > Chem panel) but the blood and urine thru Doctors Data is > NOT.... > > > > > > > > so all that comes to an avg of $550 a month > > > > > > > > NOW we have a Blue Cross Highmark PPO and I JUST NOW found out > that > > > > great plains bills them so I may be able to save on labs --for > a > > > little > > > > while... as we are moving in 4 months and the PPO is cobra > coverage > > > and > > > > the state is paying for it and we will be dropped when we move > to > > > LA. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 Even better then. Liz Mumper seems to understand the issues, from the way she practices. Whoops. I got Maureen’s last name wrong I see. I didn’t get the newsletter so can’t help there. Becky Becky, Maureen McDonnell is just a conference organizer and occasional speaker. She has no say over what happens in DAN/ARI. That’s Liz and ’s job now. Does anyone have the newest ARRI newsletter? It came in the mail the day I was doing my CBS interview at the house. I gave it to the reporter without getting to read it but saw that it did have an article about all the new ARI priorities and plans. Can anyone nutshell what those are for those of us who didn’t get to read it??? please??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 Yes, Holly and we remember who that DAN doc was too. It didn't go un-noticed by me, anyway. maurine I have at least 5 friends here that go to him.Holly Bortfeld <maximom@...> wrote: I don’t know whether the DAN docs get a kick back from labs or not. I guess some of them do when they prescribe them like they do when they resell supplements – they buy them at a bulk discount and sell them to you at full or marked up prices. It’s one of my tip-offs for “how not to choose a doctor”. I don’t see the DAN movement as deliberately excluding the poor kids from treatment, but that is the end result of charging $400 an hour. I don’t see DAN docs as merely money grubbers either. Some are, and some of the “most respected” are the worst. One showed up at the Long Island conference last year showing off pictures of his band new 8000 sq foot custom built house to people, while telling parents to figure out how to take out a second mortgage on their own home to help their kids. I wanted to throw up. I wanted to kick him down a flight of stairs. I recognize that he stands out as a pig to me because he is the exception rather than the rule but the fact that he’s allowed to participate and speak at the DAN makes me sick. PUKE. I was told recently that the DAN doctor list will be changing dramatically “soon” and there would be new requirements to be on it. that’s great. But I’d like to see some training in how to help the family financially too. From: EOHarm [mailto:EOHarm ] On Behalf Of ahs10402Sent: Monday, April 02, 2007 11:20 PMEOHarm Subject: FW: Re: Does anyone know.... Wow. That is rare, but, Mumper must be praised for that. She has a lot of influence at ARI / DAN. They should establishsome ethical standards or a DAN patients bill of rights. Maybe notthese recommendations, but, a set of standards that gives these kids the maximumtreatment for what the parents can afford. To answer the other question in my opinion is very hefty profit margins, plusthe money they directly earn from the labs like DD and some supplements. my DAN Dr. never mentioned kirkman, yet sold his supplements for 200%more on average. The justification for this is better quality labs, supplements and we cannot have the insurance companies dictate how we treat our patients.I often wonder how many DAN Doctors have approached state legislators, medical associations and reached out to service providers. Is mainline medicine going to take them seriously with a parent account of got better, got worse data? It is really sad because we know they can validate many their treatments, but, refuse to publish for, as I see it, profit motive! The leadership of ARI was invited to testify at the recent NY state autism hearings. Not one showed up or even mailed a letter outlining what they stand for. Representatives from A-champ, FAIR, NAA, ASA, AS, NYU, and others all had a presence, but, the medical group that treats our kids couldn't send a letter or any written testimony? They have a conference in Washington, yet make no effort to present collaboratively to our government officials. We need to demand greater ethics, character and vision from ARI and grow a spine for the sake of our kids and especially the kids and families who cannot afford an extra mortgage payment every month. We have made these doctors very wealthy and they deserve to make a decent salary. What have they given back towards research? I would like to know. There are a few brave people treating these children biomedically and working with mainline medicine. They are flying under the radar. They will not be attending any DAN conference this year. Why? They are prescribing the same or similar labs, except one small difference..... It is 100% covered by insurance. I will not paint all DAN Doctors with a broad brush. Many are good people and charge a fair rate for excellent services and treatment. Many are not even doctors, what kind of standard is that? Many parents and advocates are tired of doing the heavy lifting for DAN and seeing no future for insurance coverage for ALL these children. I know you all love your DAN Doctors, but, it is selfish and unethical in what they are doing. They are absolutely discriminating against parents at the lower end of the economic ladder. > > > >> > > > Hi . Have you tried making a claim for the Doctors Data > Labs > > > under> > > > your insurance? I know every policy is different, but I submit > all > > > my> > > > labs to blue cross and they have covered all of them 100%. They > have> > > > mostly been great plains and DD labs. They even covered the > urine > > > toxic> > > > metals which surprised me.> > > > > > > > > > > > > > > > I never have the lab claim it, because Great Plains charges the> > > > insurance co more and then we foot the full bill if they deny. > Less > > > risk> > > > to pay the cash price upfront and then submit to the insurance. > I > > > had up> > > > to a year to submit from the date of the lab test. > > > > > > > > > > > > > > > > Also our compounding pharmacy makes the claims to insurance for > our> > > > compound meds too. In the past, TD glutathione, TD DMPS, B12 > shots > > > were> > > > all covered. Our Rx deductible went up for compounds this year > > > though,> > > > so in some cases, the cost was less then the $50 deductible. > > > > > > > > Becky> > > > > > > > (some of the labs are covered under our insurance, like the > CBC and> > > > Chem panel) but the blood and urine thru Doctors Data is > NOT.... > > > > > > > > so all that comes to an avg of $550 a month> > > > > > > > NOW we have a Blue Cross Highmark PPO and I JUST NOW found out > that> > > > great plains bills them so I may be able to save on labs --for > a > > > little> > > > while... as we are moving in 4 months and the PPO is cobra > coverage > > > and> > > > the state is paying for it and we will be dropped when we move > to > > > LA.> > > >> > >> >> Looking for earth-friendly autos? Browse Top Cars by "Green Rating" at Autos' Green Center. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 Many people have good hearts. Many don't. Incentives work. Sometimes unfortunately. Some DAN doctors very well got into the practice because they saw an opportunity to expand their practices. Some are actually quite wonderful and work very reasonably. RE: Re: Does anyone know.... Bob, yes that is a rare DAN doc. He is an exception. Yes, the system is against us but this is not new. As parents, we have to fight it but are you telling me, that while we silly, lowly, overworked, unpaid, overtired, broke parents have to fight the system but the DAN docs who make $400 an hour DO NOT HAVE TO AND SHOULND’T EVEN BE EXPECTED TO? Really? That sucks. And parents get to have bake sale, car wash, sell-your-ass-on-ebay fundraisers to fund this research but the docs shouldn’t have to fork out a dime? Really? The systemic problems that you talked about is where I think the ARI could have, and should, come in and figure out a way around these problems. Not every university is crooked or unwilling. Create it from scratch if you have to. But doing nothing because it’s hard is not a good excuse. Our kids deserve it. And it’s not like the research will only benefit us. It will benefit them too. I know a lot of docs who work in mainstream medicine that hide their “DAN” approach. If we can get this stuff published, get health insurance coverage, then we all win. Really. From: EOHarm [mailto:EOHarm ] On Behalf Of KrakowSent: Tuesday, April 03, 2007 12:09 AMeoharm Subject: Re: Re: Does anyone know.... Holly,It would be great if DAN practitioners published more, but it is not as if there are funders ready to fund studies, and journals ready to publish those studies. Consider that DAN doctors are practitioners, and are not academic researchers. They do not have laboratories, or laboratory assistants, or statisticians at their disposal. The IRB's often stand in the way of data they do want to use and publish.I had a conversation with a DAN practitioner this very night about this. This is one of the rare DAN clinicians who has taken the time and expense (his own) to collect data regarding several novel interventions and findings, and actually published several studies. There have been many obstacles to doing this, not the least of which is the burden of collecting, coordinating and analyzing data while servicing a full complement of patients in a medical practice. This particular physician sought funding for one very important study from the "largest" autism organization and was turned down cold. When he put together a way to do the study on his own the academic institution that performed the lab work producing part of the data backed down when they saw the commercial import of the data - they wanted to keep the data to themselves because they could obtain a patent. So the DAN doctor, whose mission was treatment, was left out in the cold and a critical part of the data, very important stuff that might help many kids, never saw the light of day.This DAN doctor may be an exception - he has published a number of studies on his own, but the primary fault lies not with the DAN physicians but with a regime of research and research funding that works against the treatment objectives of the DAN protocol. Most public dollars and certainly almost all private dollars are never going to be devoted to DAN physicians. ARI laudably does raise some money and uses it wisely - generating some research. Yes, it would be better of the data collected by our DAN doctors were published, thereby validating their work, but look to the real culprits, the government research regime and as collaborators- the private organizations that have collected the community's money and hoarded it for research that is not dedicated to helping our kids today.Those are the true culprits and our children suffer more than necessary because of the obstacles they - those that control the research funds - create.Bob K.On Apr 2, 2007, at 11:48 PM, rjkrakow wrote:>>>> Hi . Have you tried making a claim for the Doctors Data Labs> under>> your insurance? I know every policy is different, but I submit all> my>> labs to blue cross and they have covered all of them 100%. They have>> mostly been great plains and DD labs. They even covered the urine> toxic>> metals which surprised me.>>>>>>>> I never have the lab claim it, because Great Plains charges the>> insurance co more and then we foot the full bill if they deny. Less> risk>> to pay the cash price upfront and then submit to the insurance. I> had up>> to a year to submit from the date of the lab test.>>>>>>>> Also our compounding pharmacy makes the claims to insurance for our>> compound meds too. In the past, TD glutathione, TD DMPS, B12 shots> were>> all covered. Our Rx deductible went up for compounds this year> though,>> so in some cases, the cost was less then the $50 deductible.>>>> Becky>>>> (some of the labs are covered under our insurance, like the CBC and>> Chem panel) but the blood and urine thru Doctors Data is NOT....>>>> so all that comes to an avg of $550 a month>>>> NOW we have a Blue Cross Highmark PPO and I JUST NOW found out that>> great plains bills them so I may be able to save on labs --for a> little>> while... as we are moving in 4 months and the PPO is cobra coverage> and>> the state is paying for it and we will be dropped when we move to> LA.>>>--- End forwarded message --- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 Keep in mind, the $400 an hour we get charged is not what they are making. I like that when I only need 5 minutes with the DAN, I only get charged for the five minutes, even if I scheduled 15. Maybe not all do that, but mine does. Like I said in an earlier post, these rates are actually comparable if regular dr visits were charged by the actual minute. When we spend the typical 10 minutes at the pediatricians, the bill is between $80-100. They have staff, rent, benefits, audits and equipment expenses to pay. Yes, they are making a good salary. But their hourly pay is more likely less than ½ what they charge. Then add in all the time they put in that is not billable, like the time spent comparing and contracting the trends among their caseload of kids, and the papers they write, and speaking at the conferences they attend. It’s just not as black and white as them paying themselves $400/hr. Now that I think of it, when I write grants for our local rural hospital, we charge $400/hr to the grant for any time from a doctor that has a major role on any project. They do this to make up for the time that the doctor can’t see patients because of meetings that aren’t billable. It sounds outrageous, but there are so many other expenses attached to seeing a doctor besides their individual salary that it makes sense. Becky RE: Re: Does anyone know.... Bob, yes that is a rare DAN doc. He is an exception. Yes, the system is against us but this is not new. As parents, we have to fight it but are you telling me, that while we silly, lowly, overworked, unpaid, overtired, broke parents have to fight the system but the DAN docs who make $400 an hour DO NOT HAVE TO AND SHOULND’T EVEN BE EXPECTED TO? Really? That sucks. And parents get to have bake sale, car wash, sell-your-ass-on-ebay fundraisers to fund this research but the docs shouldn’t have to fork out a dime? Really? The systemic problems that you talked about is where I think the ARI could have, and should, come in and figure out a way around these problems. Not every university is crooked or unwilling. Create it from scratch if you have to. But doing nothing because it’s hard is not a good excuse. Our kids deserve it. And it’s not like the research will only benefit us. It will benefit them too. I know a lot of docs who work in mainstream medicine that hide their “DAN” approach. If we can get this stuff published, get health insurance coverage, then we all win. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 Absolutely. But when I see the pediatrician, the insurance company, that I still have to pay regardless of my DAN doc, pays for all but $10 of it. When I have to pay $1150 to the doc to see my kids, it’s all out of pocket (that was the cost of our first visit). My doc does charge not just for the call time, but for the time it took her to read the file, read the email, read the lab work, etc., so my 30 minute phone call become 50 minutes at $300 an hour. Every minute is billable. I am not saying it shouldn’t be. Not for a second. I get what I pay for. Absolutely. I just want the DAN docs to band together and publish some work so we can help our kids. That is not asking for too much. As someone who has organized conferences, those docs get paid to attend and present. Most are not doing it out of their pocket. And the “like the time spent comparing and contracting the trends among their caseload of kids, and the papers they write” is the part I am bitching about. They DON’T do that. If so, where are all those papers?????? From: EOHarm [mailto:EOHarm ] On Behalf Of Becky Grant-Widen Sent: Tuesday, April 03, 2007 10:14 AM EOHarm Subject: RE: Re: Does anyone know.... Keep in mind, the $400 an hour we get charged is not what they are making. I like that when I only need 5 minutes with the DAN, I only get charged for the five minutes, even if I scheduled 15. Maybe not all do that, but mine does. Like I said in an earlier post, these rates are actually comparable if regular dr visits were charged by the actual minute. When we spend the typical 10 minutes at the pediatricians, the bill is between $80-100. They have staff, rent, benefits, audits and equipment expenses to pay. Yes, they are making a good salary. But their hourly pay is more likely less than ½ what they charge. Then add in all the time they put in that is not billable, like the time spent comparing and contracting the trends among their caseload of kids, and the papers they write, and speaking at the conferences they attend. It’s just not as black and white as them paying themselves $400/hr. Now that I think of it, when I write grants for our local rural hospital, we charge $400/hr to the grant for any time from a doctor that has a major role on any project. They do this to make up for the time that the doctor can’t see patients because of meetings that aren’t billable. It sounds outrageous, but there are so many other expenses attached to seeing a doctor besides their individual salary that it makes sense. Becky -----Original Message----- From: EOHarm [mailto:EOHarm ] On Behalf Of Holly Bortfeld Sent: Tuesday, April 03, 2007 8:05 AM EOHarm Subject: RE: Re: Does anyone know.... Bob, yes that is a rare DAN doc. He is an exception. Yes, the system is against us but this is not new. As parents, we have to fight it but are you telling me, that while we silly, lowly, overworked, unpaid, overtired, broke parents have to fight the system but the DAN docs who make $400 an hour DO NOT HAVE TO AND SHOULND’T EVEN BE EXPECTED TO? Really? That sucks. And parents get to have bake sale, car wash, sell-your-ass-on-ebay fundraisers to fund this research but the docs shouldn’t have to fork out a dime? Really? The systemic problems that you talked about is where I think the ARI could have, and should, come in and figure out a way around these problems. Not every university is crooked or unwilling. Create it from scratch if you have to. But doing nothing because it’s hard is not a good excuse. Our kids deserve it. And it’s not like the research will only benefit us. It will benefit them too. I know a lot of docs who work in mainstream medicine that hide their “DAN” approach. If we can get this stuff published, get health insurance coverage, then we all win. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 "The tv cause autism study did not threaten pharmaceutical interests. It provides a wonderful distraction. They will be seeking out opportunities to fund garbage like that." Becky, that is my point exactly. We need to threaten the pharmaceutical / medical interests. We need to threaten them with the truth. They will continue to fund silly garbage studies that only prove how much clout they have by being published in the mainstream media and shouted over the airwaves. I'm certain their only reason is to add mountains of ridiculous data about autism to an already confused public. If you throw enough crap up on a wall, some of it will stick. They have the clout and the crap, for now. They DO NOT have the science. The science is on our side, and they know it. ARI and DAN's need to publish serious studies with serious data proving their protocol works. Until they start sharing their research with the world, they will continue to be looked at as junk. I for one have had enough junk. My son was severely damaged by junk science that believes it's okay to use a neurotoxin in an injectable. If you're looking for hero's look at those researchers that are publishing their work that goes against the mainstream. I suspect you all know who I mean. Harry H.See what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 Well put Harry. I do believe it is time for ARI to step up. They have not worked collaboratively on trying to get treatment for ALL these kids. They are discriminating on the basis of money and their salaries are much above those in pediatric medicine. Last year a group of them was asked to contribute (out of their pocket) to a educational program that they wanted. Most bailed on the idea when money was addressed. I do not buy the argument about their overhead. If they are charging $400.00 per hour they are banking at least $250-$300 after overhead. With a conservative 30 hours of billable time a week x 4.3weeks = $51,600 month + profit from DD, supplements, etc. You cannot make the intelligent argument that overhead is above 50% of gross income. That puts them at a net $300,000 a year. Many charge more and work a 60 hour week. Please don't tell me they cannot pony up $10,000-$20,000 annually to validate their work. Many of you DAN Doctors lurk on this site. We all agree you should be paid what pediatricians make and even more than that. ARI can fund these studies. , you must be talking about Jim , he is a parent and an anomaly. How many others are doing this? Pediatricians and other medical professionals will not accept DAN for the right reasons. All ARI/DAN has to do is validate this. It is not the governments fault. It is ARI's and the DAN's greed and lack of vision and leadership. $50.00 out of every office visit to research would give them a couple million in no time to do the real and continued research, not this crap of parent accounts. They will likely pass it to the parents anyway. Harry nailed it in saying DAN is hiding its successes. The government issues and ARI doing their own research are two different areas. If big brother is not going to pony up money to ARI than ARI is to blame. Where are the studies? Suck it up and quit putting DAN on a pedestal and demand more from them. The more they continue to hide their success the harder it will be for these kids and families to get treatment. As you try to blame big government look at blowhard Ted " four more beers " Kennedy and his recent bill to crush compounding pharmacies. Will these DAN Doctors be addressing this in a few weeks when they are in Washington? Sadly NO! They may invite Dave Weldon to do a canned speech. Dave Weldon refuses to speak publicly and candidly about ARI/ DAN and insurance/treatment challenges. Aren't you people tired of an additional mortgage payment every month that can be currently covered with mainline medicine and your insurance? > > I love this thread. > > The DAN Doc that we took our son to for treatment began his sales pitch with > the warning that insurance wouldn't cover his services so we shouldn't > bother sending in the forms. He did say that they might cover some of the lab work > though, and handed us some forms to submit. He was less than encouraging. > > Through my work I have excellent coverage and it has covered a lot of the > things we've done for our son. I even have a prescription plan that is > surprisingly good. Yet, this doctor began by telling me I couldn't use it. My BS > detector must have been in hibernate mode that morning. > > But, after spending thousands of dollars on testing and supplements, many we > later found at substantially lower cost from Kirkman or even Whole Foods, we > woke up. This particular practice, by all appearances, was overtly profit > driven and we elected to move on. Obviously, not all DAN's are created equal. > > Despite our distasteful experience, I know the DAN protocol works for some, > probably most, of the autistic children I have come into contact with, > including our son. I have no doubt that many have even " recovered " . My wife and I > listened to Obradovic describe her journey and the remarkable recovery > of her daughter at the Chicago NAA meeting in January and were convinced. I > have also read too many stories, and seen too many videos of too many recovered > children to dismiss the blatant evidence. > > What bothers me is that, for whatever reasons, the ARI and DAN's have chosen > to hide their successes from mainstream medicine rather than challenge the > mainstream philosophy that advocates practicing chemistry rather than > practicing medicine. > > I agree with Bob Krakow that it is difficult to get funding for scientific > studies, but it's not impossible. Look, somebody gave that guy money to tell > us that too much TV causes autism, and he got published in the Wall Street > Journal. Imagine what could be done with a serious approach to autism research. > > > If as you say, there are papers currently published supporting the DAN > position, they need to be widely disseminated throughout the scientific and autism > community. We need to shove this type of information in the faces of those > who dismiss the evidence of harm, and the evidence of recovery. > > > Without the published scientific papers the DAN protocol will continue to be > branded as " junk science " by the high priests of medicine. I sure you all > realize that the Jill Neimark article in April's issue of Discover Magazine > opened a very big door for us. Let's barge into the room. > > Harry H. > > > > > > > > ************************************** See what's free at http://www.aol.com. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 I agree with all you say about the need for the research and the infiltration into mainstream medicine. It is not as easy as it may sound though. I agree with Bob Krakow that it is difficult to get funding for scientific studies, but it's not impossible. Look, somebody gave that guy money to tell us that too much TV causes autism, and he got published in the Wall Street Journal. Imagine what could be done with a serious approach to autism research. The tv cause autism study did not threaten pharmaceutical interests. It provides a wonderful distraction. They will be seeking out opportunities to fund garbage like that. Anything to get the attention off them. I don’t know if the TV autism study had these types of ties, but other funding does. That is how the tobacco industry did/does business. You know those stupid old commercials with the frying egg: “this is your brain on drugs”, well big tobacco and alcohol were major supporters of that campaign. Much better to focus on the big old nasty drugs if it gets the attention off the most commonly used ones. A large portion of private funders have ties to pharma on their boards or in their financial portfolios. Especially the ones that fund environmental/toxics research or brain research that we would be seeking out. I have been scouring the grant funder databases out there for this type of stuff so we can get it to our researchers. They are few and far between and those available often have these ties. This is good place for Autism Speaks to step up to the plate, as a large private funder of autism research. Another key piece is the ability of practitioners to write fundable research proposals, this may or may not be happening. Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 Becky, Is it so hard that they won't even try? Are they unable to fund it? This is nonsense and are families and kids are getting screwed because of it. I don't care about the TV study. Was ARI involved in applying for the grant that the TV guy obtained? It has nothing to do with a large group of doctors validating their work and particular brand of medicine. All this does is shed light on the lack of ethics, character, and vision. ARI should show up to state hearings on autism and they may get funding to do research to help these families. ARI/DAN refuses to be proactive and show up. That is 90% of the problem. They simply CAN come up with the money and do the research... they choose not to. I feel you and Bob are letting them off the hook to easily. Many of us advocates/ parents had proposals and grants denied. It doesn't mean we stop advocating or working towards our goals. This attitude has resulted in many successful outcomes which we accomplished on a shoestring budget. You do the math... a couple hundred DAN doctors working with the Autism " RESEARCH " Institute x an average(conservative) $300,000 net annual salary = $60,000,000 in net profit. 5% of that net is $3,000,000. That will fund some research to validate what I see as successful treatment options. Millions of ASD children worldwide will go untreated because this group of doctors continues to hide its successes. Forget AS. Hillary Clinton standing with the AS leadership should be your first clue that things are looking ugly over there. AS will control the public perception for years. They cannot overcome a title wave of peer reviewed science. I don't trust autism speaks motives. Let ARI do it themselves. They will have the moral high ground when it comes to credibility. The TV study guy can can sit home and watch NBC news or girls gone wild! I hope everyone will weigh in on this thread. > > I agree with all you say about the need for the research and the > infiltration into mainstream medicine. It is not as easy as it may sound > though. > > > > I agree with Bob Krakow that it is difficult to get funding for > scientific studies, but it's not impossible. Look, somebody gave that > guy money to tell us that too much TV causes autism, and he got > published in the Wall Street Journal. Imagine what could be done with a > serious approach to autism research. > > > > The tv cause autism study did not threaten pharmaceutical interests. It > provides a wonderful distraction. They will be seeking out opportunities > to fund garbage like that. Anything to get the attention off them. I > don't know if the TV autism study had these types of ties, but other > funding does. That is how the tobacco industry did/does business. You > know those stupid old commercials with the frying egg: " this is your > brain on drugs " , well big tobacco and alcohol were major supporters of > that campaign. Much better to focus on the big old nasty drugs if it > gets the attention off the most commonly used ones. > > > > A large portion of private funders have ties to pharma on their boards > or in their financial portfolios. Especially the ones that fund > environmental/toxics research or brain research that we would be seeking > out. I have been scouring the grant funder databases out there for this > type of stuff so we can get it to our researchers. They are few and far > between and those available often have these ties. This is good place > for Autism Speaks to step up to the plate, as a large private funder of > autism research. Another key piece is the ability of practitioners to > write fundable research proposals, this may or may not be happening. > > > > Becky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 How about a petition to ARI for some action in this area? > > > > I agree with all you say about the need for the research and the > > infiltration into mainstream medicine. It is not as easy as it may sound > > though. > > > > > > > > I agree with Bob Krakow that it is difficult to get funding for > > scientific studies, but it's not impossible. Look, somebody gave that > > guy money to tell us that too much TV causes autism, and he got > > published in the Wall Street Journal. Imagine what could be done with a > > serious approach to autism research. > > > > > > > > The tv cause autism study did not threaten pharmaceutical interests. It > > provides a wonderful distraction. They will be seeking out opportunities > > to fund garbage like that. Anything to get the attention off them. I > > don't know if the TV autism study had these types of ties, but other > > funding does. That is how the tobacco industry did/does business. You > > know those stupid old commercials with the frying egg: " this is your > > brain on drugs " , well big tobacco and alcohol were major supporters of > > that campaign. Much better to focus on the big old nasty drugs if it > > gets the attention off the most commonly used ones. > > > > > > > > A large portion of private funders have ties to pharma on their boards > > or in their financial portfolios. Especially the ones that fund > > environmental/toxics research or brain research that we would be seeking > > out. I have been scouring the grant funder databases out there for this > > type of stuff so we can get it to our researchers. They are few and far > > between and those available often have these ties. This is good place > > for Autism Speaks to step up to the plate, as a large private funder of > > autism research. Another key piece is the ability of practitioners to > > write fundable research proposals, this may or may not be happening. > > > > > > > > Becky > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 I like my DAN! doc, I see the PA, and I am fine with that. It's $175 hr and hardly ever more than 30 min every 8 weeks. I hated all the paper work, I must admit I was a little put off by the " my time is really important " so you must do everything as I say --guess what, my time is important too. AND the " fax it all to me 48 hours before your appt " , only to be told she was reading it when we first got on the phone --and no I wasn't billed for those first few minutes.. but still. Finally he caved I guess b/c we got emails about the paperwork pretty much saying " do it, don't do it, whatever " --up to that point I was ready to redo his whole MB12 rating chart b/c I saw in my head a better way.... Anyway, no real complaints. HOWEVER, my FIRST DAN! was a nice guy, but really had not much of a game plan going, I told him about the pharmacies he could use, I was giving him info at visits yet paying him? lol, ok he is a really sweet guy, he was one of the original DAN!'s but backed out for a while concentrating on what he did (which was adult chelation for heart disease) but eventually decided to jump in. So he wasn't ready yet, he had no outline or game plan like my guy does now. --but I was really put off when he kept putting ME OFF over MB12 shots, I wanted to start them and he was wishy washy about them. --maybe he is on board now I dont know. That was Dr. Peirsel and now we see Neubrander. On 4/3/07, Nanstiel <erik@...> wrote: > How about a petition to ARI for some action in this area? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 I like my DAN! doc, I see the PA, and I am fine with that. It's $175 hr and hardly ever more than 30 min every 8 weeks. I hated all the paper work, I must admit I was a little put off by the " my time is really important " so you must do everything as I say --guess what, my time is important too. AND the " fax it all to me 48 hours before your appt " , only to be told she was reading it when we first got on the phone --and no I wasn't billed for those first few minutes.. but still. Finally he caved I guess b/c we got emails about the paperwork pretty much saying " do it, don't do it, whatever " --up to that point I was ready to redo his whole MB12 rating chart b/c I saw in my head a better way.... Anyway, no real complaints. HOWEVER, my FIRST DAN! was a nice guy, but really had not much of a game plan going, I told him about the pharmacies he could use, I was giving him info at visits yet paying him? lol, ok he is a really sweet guy, he was one of the original DAN!'s but backed out for a while concentrating on what he did (which was adult chelation for heart disease) but eventually decided to jump in. So he wasn't ready yet, he had no outline or game plan like my guy does now. --but I was really put off when he kept putting ME OFF over MB12 shots, I wanted to start them and he was wishy washy about them. --maybe he is on board now I dont know. That was Dr. Peirsel and now we see Neubrander. On 4/3/07, Nanstiel <erik@...> wrote: > How about a petition to ARI for some action in this area? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 It is interesting that a program like DARE which teaches children about the dangers of drugs, got its funding cut by the federal government. I guess it is because of all the drugs given to children down at the health room at school! These employees of the school board really need to be investigated. They have no conscience! I ran into a teacher at the food store with her 10 month old grand child. I warned her about the vaccines. She said at her school in Balitimore County there is a whole wing for autism now! She said, " Oh they took it out in 1999! " I said, they did not take it out they were asked to start phasing it out. polis peds were still using it mercury containing shots into 2004! I told her that some of the vaccines have mercury and stay away from all flu shots. She said the teachers were told it is out! She was so upset. I gave her lots of web sites! Elaine Dow >From: " Becky Grant-Widen " <bgrantwiden@...> >Reply-EOHarm ><EOHarm > >Subject: RE: Re: Does anyone know.... >Date: Tue, 3 Apr 2007 12:48:39 -0400 > >I agree with all you say about the need for the research and the >infiltration into mainstream medicine. It is not as easy as it may sound >though. > > > >I agree with Bob Krakow that it is difficult to get funding for >scientific studies, but it's not impossible. Look, somebody gave that >guy money to tell us that too much TV causes autism, and he got >published in the Wall Street Journal. Imagine what could be done with a >serious approach to autism research. > > > >The tv cause autism study did not threaten pharmaceutical interests. It >provides a wonderful distraction. They will be seeking out opportunities >to fund garbage like that. Anything to get the attention off them. I >don't know if the TV autism study had these types of ties, but other >funding does. That is how the tobacco industry did/does business. You >know those stupid old commercials with the frying egg: " this is your >brain on drugs " , well big tobacco and alcohol were major supporters of >that campaign. Much better to focus on the big old nasty drugs if it >gets the attention off the most commonly used ones. > > > >A large portion of private funders have ties to pharma on their boards >or in their financial portfolios. Especially the ones that fund >environmental/toxics research or brain research that we would be seeking >out. I have been scouring the grant funder databases out there for this >type of stuff so we can get it to our researchers. They are few and far >between and those available often have these ties. This is good place >for Autism Speaks to step up to the plate, as a large private funder of >autism research. Another key piece is the ability of practitioners to >write fundable research proposals, this may or may not be happening. > > > >Becky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 One thing we can do against Big Pharma. I stopped buying magazines, Ophrah included, that advertise all the drugs they sell to our kids, Paxil, Staterra, Etc. I found Womens Day etc. had the ads in there. Also check products that are over the counter. I cut our 40 dollars each month in toothpaste, skin products, etc that were made by the vaccine makers. We can do it as much as possible. In land, Perdue feeds arsenic to the chickens. " It's not toxic arsenic, we clear it right away! " they claim. The eastern shore in full of arsenic in public water. Can't drink it, but people are still washing clothes and themselves in it! Our Chesapeake Bay is full of arsenic. We don't buy Perdue chickens any more. All the resturants use Perdue, so we order something else. We could start by not buying their products. I hope their chickens rot in the grocery store. My father's roomate at town was the General Counsel for lobbyists for Big Parma after World War II. He was making 50,000 each year 60 years ago. He told my Dad to come work with him, they are throwing the money at you he bragged. My Dad and he parted as friends! Elaine Dow >From: hhofher@... >Reply-EOHarm >EOHarm >Subject: Re: Does anyone know.... >Date: Tue, 3 Apr 2007 15:13:20 EDT > > > " The tv cause autism study did not threaten pharmaceutical interests. It >provides a wonderful distraction. They will be seeking out opportunities >to fund >garbage like that. " > >Becky, that is my point exactly. We need to threaten the pharmaceutical / >medical interests. We need to threaten them with the truth. > >They will continue to fund silly garbage studies that only prove how much >clout they have by being published in the mainstream media and shouted over > the >airwaves. I'm certain their only reason is to add mountains of ridiculous >data about autism to an already confused public. If you throw enough crap >up on >a wall, some of it will stick. > >They have the clout and the crap, for now. They DO NOT have the science. >The >science is on our side, and they know it. > >ARI and DAN's need to publish serious studies with serious data proving >their protocol works. Until they start sharing their research with the >world, >they will continue to be looked at as junk. > >I for one have had enough junk. My son was severely damaged by junk >science >that believes it's okay to use a neurotoxin in an injectable. If you're >looking for hero's look at those researchers that are publishing their >work that >goes against the mainstream. I suspect you all know who I mean. > >Harry H. > > > >************************************** See what's free at >http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
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